The Myelin Repair Foundation is a California-based non-profit medical research foundation dedicated to accelerating basic medical research into myelin repair treatments that will dramatically improve the lives of people suffering from multiple sclerosis.

The Myelin Repair Foundation was created by Scott Johnson, an experienced biotechnology CEO who was diagnosed with MS in 1976. At that time Scott’s physician told him there would be a cure in 30-50 years. If Scott were diagnosed today, he would be told the same thing. With the billions of government and non-profit dollars spent on basic medical research each year, Scott wondered, “Where are the cures?

His solution is the Accelerated Research Collaboration model, whereby the Myelin Repair Foundation has forged partnership agreements among medical researchers at Stanford University, the University of Chicago, Northwestern University and Case Western Reserve University. Under those agreements, leading researchers are sharing data and working together to accelerate studies that could lead to a cure for MS – and inevitably breakthroughs that arise for other autoimmune diseases.

The Accelerated Research Collaboration model is cutting in half the time to make basic scientific discoveries and shepherding those discovers into commercial development. Scott’s entrepreneurial quest for a cure for MS has been recognized in the The Wall Street Journal, BusinessWeek and Scientific American. Further, more than 60 different disease research organizations have expressed an interest in the model and how it might be used to leverage their own research investments and bring treatments to patients who can’t afford to wait.

12. https://www.iconquerms.org/ - A research group. As a member you fill out periodic questionnaires with 6-month updates so you and the researchers can use the de-identified data about use of various MS treatments, exercise, diet, supplements, etc.

There are too many treatments of various symptoms to list but one that has been attracting considerable attention recently has been Ampyra, which seems effective in improving walking in some people with MS.

This is a fantastic organization that has helped me tremendously. I am also diabetic and the diabetic insulins are extremely expensive. They have arranged for Levemir and Novolog for me at little cost. When you go to their website it will say that they don’t cover people on Medicare but they do. They cover people with Medicare and private insurance. Fill out the paperwork and they will call you. Or you can call them at 1-866-722-6479. They work as a go-between with the drug manufacturers. They charge $50 per month for the first prescription and $15.00 for every prescription thereafter indefinitely.

There's a web tool that will help you determine if a Prescription Assistance Program (PAP) could help you with the expenses you incur for drugs when the Medicare part D "doughnut hole" kicks in and isn't covering drugs. Click "Drug Coverage (Part D) at the top, then click "Costs for Medicare drug coverage", from the drop-down menu.

Special thanks to everyone who contributed to this thread, especially David Hosobuchi, Mike Weins, Moderator #7, BBS1951, Cherie, Frog42, the late JTwin (Joy), 'Lissa, mmcc53, Salpalsally (Sally), and 0357. Please let me know by PM if there are any changes you think should be made.

The most recent Rocky Mountain MS Center eMSNews contains up-to-date information about some of the programs for assistance in paying for MS drugs:

Copaxone Patient Assistance Program – Teva PharmaceuticalsIn June Teva implemented a new co-pay solution for patients with commercial health insurance (non-Medicaid & non-Medicare) that helps reduce co-pays to $35 per month, out of pocket. There are no income qualifications, but patients need to have a co-pay of $535 or less. For uninsured patients Teva offers assistance in partnership with AssistRX. There are also assistance programs for people using Medicare Part D. To learn about any of these options, contact Shared Solutions at 1-800-887-8100 Betaseron Patient Assistance Program – Bayer PharmaceuticalsFor patients with commercial health insurance, Bayer usually pays 100% of the co-pay. Patients will continue to receive Betaseron for free as long as they are on the therapy. They do not have to re-enroll or reapply after one year. The only time they have to re-enroll is if their insurance changes. The maximum per year patient benefit is $9500. There are no income qualifications for this program. Through another payment assistance program, uninsured or underinsured patients will pay no more than $50 dollars per month. To learn about any of these options, contact BetaPlus at 1-800-778-1467

Ampyra Patient Assistance Program – Acorda Therapeutics

Patients with commercial insurance can sample Ampyra for free for 60 days. After that, if the medication helps, patients will only pay $40 of whatever their co-pay is. Medicare patients can apply for patient assistance, which is funded by Acorda and is based on income levels. If the patient qualifies, Ampyra is free for that calendar year. Colorado Medicaid covers Ampyra, making it free to Medicaid patients with MS and walking difficulty.

Rebif Patient Assistance Program -- EMD Serono, Inc. and Pfizer Inc
The MS LifeLines Reimbursement Specialists can answer questions on topics including enrollment, benefits and prior authorization requirements for a variety of health insurance and prescription drug programs. If you currently have health insurance, they'll work with you to help you get the best available coverage under your insurance plan. If you have questions about affording your therapy or if you have no insurance or limited insurance, MS LifeLines Reimbursement Specialists will help get you connected with the appropriate assistance programs, as well as appropriate state or federal programs. Call MS LifeLines Access Made Simple at 1-877-447-3243

Avonex and Tysabri Access Programs - Biogen Idec Biogen offers patient assistance through its ActiveAccess Services. This program offers insurance counseling to help patients obtain adequate coverage, along with help navigating changes due to the new healthcare reform law. It can also include $10 Copay Programs with no income requirements and no enrollment time limit for eligible patients, infusion cost assistance program for eligible patients, and free medication for eligible patients in need. To learn more about ActiveAccess or the cost and insurance assistance programs, call an ActiveSource Coordinator at 1-800-456-2255.

Gilenya - Novartis Pharmaceuticals CorporationIf you are unable to afford Gilenya or don't have health coverage, the Novartis Patient Assistance NOW might be able to help. If you have commercial health insurance, the Gilenya Go Program will cover your out-of-pocket costs up to $800 per prescription benefit and $10,400 per calendar year. This co-pay assistance program is available for eligible people who have been prescribed Gilenya, regardless of income level or medical history. The co-pay assistance program will also cover up to $600 per year for additional medical expenses associated with Gilenya treatment. To learn more about Patient Assistance NOW or the Gilenya Go Programs, call 1-800-445-3692.

Ask Your Doctor for HelpLastly, let your doctor know that the cost of medication is an important consideration for you. He or she might be able to suggest an equivalent medication, have a staff member help you fill out paperwork to one of the patient assistance programs or know of another solution, such as an open-label clinical trial.

The material on this site is for information & support purposes only, and is not a substitute for medical advice provided by a licensed health care provider.
Always consult your doctor before trying anything that you find online.